 |
| Author | Post |
|---|
Prydn
Member
|
Posted: Thu Apr 13th, 2006 23:51 |
|
Please forgive this clumsy post -- since I haven't yet commenced Phase 1, I don't know if there is another forum to post these questions. Still educating MD and preparing life for MP once our doc is on board (we don't have the resources to travel to another state for the closest MP MD -- locals on the list have disappeared).
I've been reading the forums and FAQs for 6 weeks and using the search, but can't find an answer to this question, hence the apologetic post: I was put on low dose Benicar seven months ago for BP control. I'm still on ILADS high dose abx protocols for Bb (see sig.line). My Benicar was recently doubled from 10mg q 12hrs to 20mg q 12 hrs. Could this tiny dose of Benicar (40mg/day) be potentiating the abx?
Tomorrow, I'm supposed to start a new protocol of once every two weeks IV Clindamycin and pulsed 50mg minocycline. I already feel bizarre and am wondering if the low dose Benicar could be causing a bad herx which might get dangerous with the new protocol.
I cannot take beta-blockers for BP. Just trying to get MP in place without losing hard-won improvements. Please advise me re low dose Benicar as no one else out there in professional medical cyberland seems to know anything about this!
THANK YOU!
Annie H.
____________________
Res/pre-MP; Bb dx 1998; 25D:38,1,25D:39, 3/06; Bimonthly IV 900mg clindamycin, 50mg minocycline daily; Ben (htn) 10mg q12hrs; T3,T4; DHEA, mag, NoIRs; reducing light&D.
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
| Status: |
Offline
|
|
Posted: Fri Apr 14th, 2006 01:12 |
|
Annie
Thanks for posting. Your post has been moved to the General Discussion Board as the appropriate forum. all is well.
re "Tomorrow, I'm supposed to start a new protocol of once every two weeks IV Clindamycin and pulsed 50mg minocycline. I already feel bizarre and am wondering if the low dose Benicar could be causing a bad herx which might get dangerous with the new protocol."
You are right to be concerned. I see in your signature line that you have begun reducing light and D, and your use of some Benicar all adds to the lowering of 1,25D... either or all aspects that may influence the immune system, which may potentiate the action of any antibiotics you take and we recommend discontinuing Benicar 48H before use of abx in non MP circumstances if wanting to avoid the herxheimer.
see SAFETY WARNING TO ALL for safety and efficacy, combining other protocols with any aspects of the MP is contraindicated
re BP: see this FAQ Why is my B/P high? Why does it fluctuate? for further information to discuss with your Dr. says in part: Benicar is not a very potent anti-hypertensive so your doctor may want to prescribe a different anti-hypertensive medication (not a thiazide diuretic) to control your high B/P. This article provides some alternatives.. If it is suitable for you, and to your Dr, the diuretic furosemide (Lasix) is compatible with MP.
see SUGGESTIONS TO GET YOUR DOCTOR ON BOARD WITH THE MP
and you can invite Doc to call Dr Marshall or join the PRIVATE SECTION FOR HEALTH PROFESSIONALS
all best, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
LH1953
Member in Phase 3
|
Posted: Fri Apr 14th, 2006 05:12 |
|
Hi, I see you live in the US so I can call you. PLEASE, try to NOT go on any IV for Lyme! The MP is the place to be. I was on IV twice, with no relief. The ABX feed the TH1 bacteria. My cousin started the IV, got SO ill, had to stop after 2 weeks. Lucky, I found the MP. We are both doing MUCH better.
I got drug induced hepatitis from the second IV. The ALK PHOS for liver fuction, went up to 1900, normal high is 150. This lasted for 1 year. The MP has put my Lyme close to remission. I was ill with this for 14 years undiagnosed. Under constant treatment for 4 years. Mino worked the best for me orally 100mg two times a day. Helped with the pain, muscle and joint, not the symptoms. GET ON THE MP ASAP. This is your cure.
I had a Picc line in the arm, and a Hickman Cath in my chest the second time. This was very painful when I started to Herx. Good luck, and keep in touch. Lori
Last edited on Fri Apr 14th, 2006 05:14 by LH1953
____________________
Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, alupent inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
|
Prydn
Member
|
Posted: Sun Apr 16th, 2006 20:04 |
|
Barb, I'm so grateful for your quick and expert replies. Thanks!
The IV clindamycin will be once every two weeks. I re-scheduled the first IV so I can stop the Benicar two days prior as you suggested. How soon may I re-start it for the interim?
I looked at the MP blood pressure control links and posts, but am still not sure if you consider it safe to combine Benicar with ACE inhibitors. I can't use beta-blockers or diuretics, and Benicar alone does not sufficiently control my blood pressure.
I feel so lousy today, I can't surf the website, eyes won't cooperate even in this darkness and head hurts too much. Please advise where I can find the posts which discuss how to differentiate between herxes and symptom flares.
Thanks and Happy Easter, Annie
____________________
Res/pre-MP; Bb dx 1998; 25D:38,1,25D:39, 3/06; Bimonthly IV 900mg clindamycin, 50mg minocycline daily; Ben (htn) 10mg q12hrs; T3,T4; DHEA, mag, NoIRs; reducing light&D.
|
P.Bear R.N.
Inactive Staff
| Joined: | Fri Dec 3rd, 2004 |
| Location: | USA |
| Posts: | 2125 |
| Status: |
Offline
|
|
Posted: Sun Apr 16th, 2006 22:21 |
|
| Annie, I would second Lori's opinion about not doing IV antibiotics. I would try convince your provider to give you the right dose of benicar so that you can start the MP. All the time and money you spend on IV meds and high dose antibiotics will only delay your progress and make you poorer. When I found out I could herx more on 1/320th of a dose of a MP antibiotic that I had used before without much herx, I knew I was on the right track. I would like to go back in time and not have wasted 18 months doing the high doses of antibiotics. Also, I would recommend weaning off the DHEA, as this will suppress your immune system. best, P.B. Last edited on Sun Apr 16th, 2006 22:27 by P.Bear R.N.
|
jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3924 |
| Status: |
Offline
|
|
Posted: Sun Apr 16th, 2006 23:04 |
|
Your first post said you are not yet on the MP, but if you have a Th1 disease and you have even a little bit of benicar under your belt, you and your doctor may want to read up about the natural consequences of that combo on this site.
You asked "Could this tiny dose of Benicar (40mg/day) be potentiating the abx?" My earliest experience with Benicar was with less than the optimal Phase I Marshall Protol suggestions. It did indeed catapult my immune system into one very memorable intolerable herx even with no other medication was in my system. But a full Benicar blockade in place as per Marshall Protocol Phase I instructions has never been a problem.
I agree with Aussie Barb, Lori and P.Bear R.N.: Do the MP, and you don't want to mix protocols. Also, any other protocol is either a waste of time or a risk of trouble.
You get to choose, really: The MP or not. Consider your responsibility to accept or refuse treatment as you partner with your doctors (or even new doctors if that is what it takes) for your wellness, and avoid dabbling in dead ends.Last edited on Sun Apr 16th, 2006 23:05 by jrfoutin
____________________
Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Sun Apr 16th, 2006 23:45 |
|
Annie,
You have gotten excellent advice from everyone but this is too important for me not to chime in too.
Do NOT take any IV antibiotics if you are on any aspect of the Marshall Protocol. It isn't safe because you may have a serious Herx reaction. Your increase in symptoms suggests that your light and Vitamin D avoidance have already helped your immune system to function better.
You are not taking enough Benicar to serve as the vital anti-inflammatory that you need while Herxing.
While you may have experienced some recent symptom relief, that does not mean you have progressed toward a cure. Those effects may be purely palliative.
You need to kill the intraphagocytic bacteria and they only way to do that is on the Marshall Protocol. Please ask your doctor to support the MP and not to add anything to it.
Best,
Meg
|
Prydn
Member
|
Posted: Tue Apr 18th, 2006 03:01 |
|
Very interesting. Thanks, folks. We've spent 8 years fighting to educate local MD's in this "non-endemic region," who don't "believe in" Lyme disease, to recognize and treat our illness. We finally get one physician on board with ILADs protocols, only to find that we need the MP and are back at square one, with our doctor refusing to prescribe 4+ times the max dose of Benicar and disbelieving the implications of our D tests despite all the papers, abstracts & links we've provided per this website. I just ordered the 30th anniversary Lyme Conf. DVDs to help persuade her.
We will find a way to implement the MP soon, but it's not going to happen overnight. Right now, we can't afford to take time off from work to travel to the closest MP MD for two very expensive encounters, and buy the Benicar our insurance will not cover. Until that happens, we can't simply stop taking abx, altho we have stopped all the penicillins and cephalosporins which encourage conversion of spirochetes to intraphagocytic L-forms, and are glad that our instincts made us refuse IV Rocephin when it was suggested for us. It's hard to believe that the clindamycin and minocycline won't kill anything, but even if they're just palliative, that's better than nothing.
I didn't realize that avoiding ingested D and reducing light (we're nowhere near MP-level light avoidance) constituted "mixing protocols." Should we refrain from those measures before we can engage fully in the MP? Is this what you mean re being on some aspect of the MP?
Meg, thank you for your concern. Please clarify re the low anti-htn Benicar dose (I was put on it many months ago for BP control, before I knew about the MP. I can't take beta-blockers or diuretics): 1. If it is too low to be anti-inflammatory, isn't it too low to provide the inflammatory blockade that potentiates the antibiotics? 2. If I switch to an ACE inhibitor, would I be able to combine that later with Benicar on the MP?
P.B., I have been weaning off DHEA (down to one third of my original dose), but since my hormone levels aren't yet being fixed by the MP, perhaps I shouldn't do that at this time either? It sounds like you guys are saying "all or nothing," that it is ill-advised to make any of these changes before the complete MP is in place. Is that correct? I was simply trying to initiate whatever we could do immediately, ie light, food and supplements.
I don't know whether to be dismayed or amused by the suggestion that I'm not taking responsibility for our lives and health. For ten dangerous years, I took responsibility for the lives of patients and partners as a Chicago Fire Dept. paramedic. For 15 years after that, I've managed a family, job and rugged mountain living while fiercely struggling with my husband's and my disease. No one who knows me would ever suggest such a thing. So, I think I'll just laugh at that. If some of you can magically make this happen instantaneously, more power to you! Reading many posts has shown me that lots of people are delayed in transition as we are. We greatly respect the science and efficacy of the MP, and are progressing as quickly as possible, with the goal of maximizing our safety and well-being along the way.
Sincere thanks to all who have offered encouragement and constructive advice.
Annie and Jim
____________________
Res/pre-MP; Bb dx 1998; 25D:38,1,25D:39, 3/06; Bimonthly IV 900mg clindamycin, 50mg minocycline daily; Ben (htn) 10mg q12hrs; T3,T4; DHEA, mag, NoIRs; reducing light&D.
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Tue Apr 18th, 2006 05:18 |
|
Annie and Jim,
Thanks for your thoughtful, clarifying reply. We are very sympathetic to those who have to struggle to get on the MP. Imagine what it was like 3 years ago!
If you want to limit your Vitamin D ingestion and sun/lights exposure while taking minocycline or clindamycin per your LLMD instructions and using Benicar for hypertension only, keep in mind what may be happening if symptoms exacerbate. You may need to make some changes if you become too ill. The antibiotics might be killing some bacteria, especially if your lifestyle changes allow your immune system to function better.
Please point out to your doctor that Benicar has been extensively studied and proven safe at 80mg a day so you are really only asking for 2-3 times the standard dose. An ACE inhibitor is not contraindicated if you need another antihypertensive.
I'm glad to know that you will keep working toward getting the Benicar blockade in place. It and the right combination of low-dose, pulsed antibiotics are what will finally send your chronic Lyme packing.
If supplemental DHEA is interfering with your immune system, it is doing you more harm than good so it's best to wean off it as soon as possible.
Best,
Meg
|
Prydn
Member
|
Posted: Thu Apr 20th, 2006 17:38 |
|
Meg, thank you, thank you, thank you for understanding and for answering our questions. Undoubtedly, as you say, 3 years ago those seeking the MP must have felt like Lymies talking to Colorado MD's...I actually had one clueless rheumatologist refuse to believe my Bb dx despite excessively positive Western blot and huge constellation of S & Sx.
He insisted "we don't have it here." I tried to explain that we do, indeed, it just isn't getting diagnosed, and went on to inform him that, 15 years ago, the Forest Service and CDC did a study in the northern Colo. Rockies that found Bb in the spleens of 90% of the rodents. His response? "Well, maybe, but for some reason the people here don't catch it." ARRGHHH!  He was soooooo frustrated when his tests didn't confirm R.A., SLE, scleroderma or any other convenient label, since I had what appeared to be a little of each...DUH!
I have a huge flat spot on my head from beating it against the proverbial wall for so long. A dear friend who's suffered 15-yrs w/ borellia thinks that her young MD cousin in Nebraska may take on the MP for us. We're getting closer!
I'm still not sure how to distinguish between flares and herxes. True to your warnings, the relief from S & Sx I got during 5 mos on amoxicillin & clarythromycin began to reverse after just one week off. Damn! How do I know if the return of glossitis, prickling sweats, arthralgias, stiff neck, headaches and fibromyalgia is the unsupressed disease or a herx?
Your dedication is awesome. Thanks as always!
Annie
____________________
Res/pre-MP; Bb dx 1998; 25D:38,1,25D:39, 3/06; Bimonthly IV 900mg clindamycin, 50mg minocycline daily; Ben (htn) 10mg q12hrs; T3,T4; DHEA, mag, NoIRs; reducing light&D.
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Fri Apr 21st, 2006 02:58 |
|
Annie,
Folks on the Marshall Protocol have an effective inflammatory blockade in place. That is, Benicar 40mg every six hours. This ensures that the immune system can kill the bacteria that are weakened by the unique antibiotic dosing of the MP. Usually the subsequent symptoms occur in a waxing and waning pattern which is evidence that they are coping with the Herxheimer reaction and not disease progression. Please see:
Herx… What is it?
Since you do not have the Benicar blockade in place, if you take high dose antibiotics, it may be difficult for you to assess if any symptom exacerbation is due to disease progression or the Herxheimer reaction. And as you have noted, symptom relief with this treatment is temporary.
Best,
Meg
|
jcwat101
Research Professional
| Joined: | Tue Jul 20th, 2004 |
| Location: | Pasadena, USA |
| Posts: | 1453 |
| Status: |
Offline
|
|
Posted: Wed Jul 12th, 2006 20:43 |
|
Lori,
Interesting about the very high alkaline phosphatase from the IV treatments.
I guess it was Rocephin (ceftriaxone) you were on? How long were you on it when that occurred? Had you or your doctor heard of such a large reaction before?
I also wonder if you had symptoms associated with that alkaline phosphatase elevation.
Joyce Waterhouse
____________________
20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
|
LH1953
Member in Phase 3
|
Posted: Thu Jul 13th, 2006 17:19 |
|
Hi Joyce,
I say PLEASE, try to NOT go on any IV for Lyme! The MP is the place to be. I was on IV twice, with no relief. The ABX feed the TH1 bacteria. My cousin started the IV, got SO ill, had to stop after 2 weeks. Lucky, I found the MP. We are both doing MUCH better.
I got drug induced hepatitis from the second IV. The ALK PHOS for liver fuction, went up to 1900, normal high is 150. This lasted for 1 year. The MP has put my Lyme close to remission. I was ill with this for 14 years undiagnosed. Under constant treatment for 4 years. Mino worked the best for me orally 100mg two times a day. Helped with the pain, muscle and joint, not the symptoms. GET ON THE MP ASAP. This is your cure.
I had a Picc line in the arm, and a Hickman Cath in my chest the second time. This was very painful when I started to Herx.
The first time I was on IV rocephin. I talked my allergist into helping me when I first moved to Florida. I got my DX in NY, and there was not enough time to treat with IV, so I was on ceftin 500mg 2 times a day and Zith 250, 2 times a day. When the Alk Phos went to 250, he freaked and took me off the IV after 4 weeks. (By the way, I insisted the blood work, he did not even think to do it).
It took me another year to finally find an infectious disease Doc who would see me. Everyone refused, saying I was too complicated for them to treat me. This time I was on IV Claforan, pulsed 24 hours. The Doc thought that this would cause less slugging since the last IV was given 1 time a day.(He said I was the only patient who could not tolerate the IV in his practice, he did not understand why) This lasted for 4 weeks. I loved this Doc, but his office was never on top of my blood work, nor was he. I insisted on having blood drawn, at lab every week. I would call the office to inquire, and it would take them another week to get the results, which was crazy!
By the time I found out it was 1,900, I was feeling SO ILL, itching that the Doc perscribed 400mg of Atarax every 4 hour and asked me to try to get over the hump. The visiting nurse also suggested this. I tried this for 24 hours, then disconnected the IV.
My Father had died the day before, so I assumed this was my nerves causing the reaction, not my liver. When all was said and done, I found out that the 3rd week into treatment, my Alk Phos had gone from 400 to 1,400 and I know I should have been taken off then.
I ALWAYS INSIST that any Doc fax me my test results. I have never trusted them telling me things are OK. I told the Doc I was VERY disappointed that he allowd this to happen, any patient on IV should be watched more closely. I suffered needlessly. He was sorry.
The Doc told me his peers think he is crazy because they DO NOT believe in Chronic Lyme. They do not understand why he would treat for it. I am greatful for him trying for me. He would not do the MP for me. I talked my primary care Doc into it. He has no interest to learn, just gives me what I need. I brought the MP papers to him, and letter of consent. At first he would only give me 30 Benicar. I took this for 1 week. Called him and said I'm still alive taking 4 times a day. He then has given me the full RX.
That is my tale of whoa! I'M SO PLEASED TO BE ON THE MP! Lori
____________________
Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, alupent inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
|
jcwat101
Research Professional
| Joined: | Tue Jul 20th, 2004 |
| Location: | Pasadena, USA |
| Posts: | 1453 |
| Status: |
Offline
|
|
Posted: Tue Jul 18th, 2006 02:28 |
|
Lori,
Thanks for the info.
So, it sounds like you had the alk. phosph. elevation on both the IV Rocephin and the IV Claforan. Interesting.
Of course, we have had some people have temporary liver enzyme elevations on the MP also, so since you are prone to that, you will probably want to monitor the liver enzymes (as you probably already are).
Joyce Waterhouse
P.S. I'm am not on the MP staff, so that is just my opinion, not official advice
Edit: And if you did have a liver enzyme elevation on the MP, it would probably just mean you need to slow down on your antibiotic dose increases or take a break of some sort
Mod add: Why isn't Ceftin or amoxicillin included in the Marshall Protocol?
____________________
20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
|
LH1953
Member in Phase 3
|
Posted: Wed Jul 19th, 2006 17:28 |
|
Hi Joyce, I go for blood work every 4 weeks. So far so good. I need to do the MP slow, but have had SO much improvement. I'm not bionic yet, bet getting there. I am far from the norm, but feeling far from death as before the MP.
Forever Grateful for MP Lori
____________________
Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, alupent inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
|
Current time is 06:51 | |
|
|
|
|
